Commentary on summary of Penrose Inquiry report

7yrs after its initiation and with £12m spent, the Penrose Inquiry completed its findings into infection by blood transfusion and blood products in Scotland between 1974-1991; 1991 being the cut-off period of risk because of installed procedures against infection. The result was an 1800 page report which was branded a “whitewash” by people affected because it appeared to exonerate the NHS. It is this blogger’s personal view that that aspect of the report was actually fair because once things were able to be identified appropriate action was taken. However, AIDS dissidents would not agree on the facts around HIV/AIDS (and there would be extended dispute from some about Hepatitis C, which for brevity I’ll ignore). This post is not based on the lengthy report but the summary, but since we’re going right down to findings this should not be an oversight.

Facts and figures show that of the few thousand people investigated only 78 were infected with HIV. 18 of these were through blood transfusions (so there may or may not be some haemophiliacs in this) and the rest (60) were all haemophiliacs. Notably the summary states:

[The UKHCDO and Scottish Haemophilia Directors] organisations exchanged information and their concluded view was that the number for this group of people [the HIV-infected haemophiliacs] was 60, a figure the Inquiry accepts as accurate. Of that number, 23 were infected at the Royal Infirmary of Edinburgh, 12 at the Glasgow Royal Infirmary, three at the Aberdeen Royal Infirmary and 21 at the Royal Hospital for Sick Children in Glasgow (Yorkhill). The final patient was thought to have been infected by treatment at a non-specialist centre.

None of the 59 bleeding disorder patients who acquired HIV at an identified centre had mild haemophilia: in five, the condition was moderate and in 54 severe. [emphasis added] Fifty-seven had Haemophilia A and two had Haemophilia B.

On the information available to the Inquiry, 39 of those patients were known to have died.

The dissident view is that the more severe the haemophilia the more likely chance there is of testing HIV+, partly because of the ‘antigen overload’ of clotting treatment. This would not be surprising given that most of the affected are shown to be haemophiliacs, and it parallels the findings of the Republic of Ireland’s Lindsay Tribunal at the turn of the century (that report’s title tellingly is Report of the Tribunal of Inquiry into the Infection with HIV and Hepatitis C of Persons with Haemophilia and Related Matters). If there were to be further inquiries in England, Wales and Northern Ireland we could predict the same pattern: most ‘infected’ would be haemophiliacs (and the functionally similar sufferers of Von Villebrand Disease). In any case, 78 HIV patients versus approx. 2,500 Hepatitis C patients suggests that there was not much HIV in the Scottish blood supply to infect people, and the affinity was to haemophiliacs. But the problem is that:

In the spring of 1983, clinicians in both Glasgow and Edinburgh began research into whether there were immune abnormalities in haemophilia patients treated at their centres. The research demonstrated that there were such abnormalities, but their significance was unclear. [emphasis added] The theory that such abnormalities could result from exposure to proteins from many donors continued to persuade some clinicians, and it was also believed that not all those with such abnormalities would become ill and, of those who did, not all would suffer a fatal outcome.

If there are immunity issues in haemophiliacs to begin with you cannot uniquely pin AIDS to HIV. If only < 100 people tested HIV+ in relation to blood transfusions and blood products, and you were asked if, as a non-haemophiliac, you would like to go ahead with a blood transfusion between ’74-’91, you would be quite confident that HIV would not be one of the problems you could face.

We can also be quite confident that drug users would not be likely to donate blood to add to taint in the supply:

In retrospect, the single largest group to test positive for HIV in Scotland over the period 1984 to 1989 was intravenous drug users; 30% of the total in Glasgow and 53% in Edinburgh were IV drug users. It is not likely, however, that the people affected by the outbreak amongst drug users were also blood donors.

Gay men would have been donating blood prior to the discovery of ‘HIV’ and yet the AIDS epidemic among them did not impact on the NHS blood scandal. i.e. at least a small number of gay men are likely to have given blood, some with HIV/AIDS, and yet we had just a total of 78 NHS infections, mostly to haemophiliacs, who seemed to be improving in health as they tested positive:

More generally, the Inquiry notes that the news that . . . patients had been infected with HIV by treatment came after a period in which haemophilia clinicians had seen those patients’ lives transformed by concentrates, and had rejoiced with them.

The tragedy of the lengthy, costly, inquiry was not that ‘no heads were rolled’, but rather the wrong heads were targeted in the first place.

When such guidance proves wrong, it is inevitable that some patients would feel angry and betrayed.